Beware not to drop Prednisolone too much

[Carol]

It is now the second time I have been told to drop my Prednisolone by my rheumatologist by 5mgs. Both times I have had problems with my coordination going and the optic nerve in my eye playing up. So I have decided that in future I will drop it by 2 1/2 mgs only at a time so over the six weeks before he hopes to get me down by another 5mgs I will drop it down for 3 weeks then the next 3 weeks. I was taking 20mgs so by dropping it by 5mg that's 1/4 which is obviously just too much. So other Weggies this may be an idea for you too as our bodies get so reliant on the Prednisolone don't they!!

[andrew]

Yes, I completely agree. The last 10mg or so of Pred that I came off went down by 1mg per week. Good advice!

[Rodger]

It seems like I'm joining the thread midway, but my rheumy was very specific about stepping down by 2.5 mg at time over a number of weeks. Of course the higher the dose the longer it will take. Fatigue was my biggest complication and he would allow me to hold at certain points so my body could catch up.

[Carol]

Following the rheumatologist telling me to drop my Prednisolone by 5mgs and then having eye problems again(inflamation of the optic nerve - blurred vision in one eye only) I have been told by the Melbourne Eye Hospital to go back up 40mgs ....... after being on 20mg for so long I was looking forward to it going down. So I have definitely learnt a lesson and hopefully so has the rheumatologist that a 5mg is too much - that was a 1/4 of my dose.

[Twice]

Ug. Classic love/hate relationship with pred. I've been on it for 30 years and I confess that if I have a 'big day' I'll take some extra for the 'buzz', but if I have a flare and have to take a bigger dose for any length of time I learn to hate it again really quickly.

Sometimes coming off it seems like a necessary evil. It's always a bit unpleasant and it makes you feel a bit rubbish, but really, if you don't get over the 'cold turkey' in a few days and continue to feel ill then it's best to go back to the doc and slow it down.

Doctors seem always to be a bit too willing to reduce medication with WG. It always seems to take a little bit more than they think is the right amount.

[crackers]

two years ago when i first started with this i was on 30mg of pred.since then they have been trying to reduce it but with each reduction comes the return of the symptoms.at the moment i am taking 7.5 and 5 on alternate days but the fatigue has got worse(if that's possible) and that damn cough is back with a vengeance.i know long term steroid use can have it's problems but if there is no alternative medicine to ease the symptoms i would prefer to find the lowest dosage that does the job and stick with it.must have a chat with my rheumy next time i see her.

[Sangye]

The fatigue can be due to your adrenals not kicking in enough, after all that time on prednisone. That's the case with me, anyway.

[Twice]

I understand that the body normally manuactures about the equivalent of 7.5mg of the appropriate hormone but will stop completely when you're taking that much or above. Your body quite quickly gets used to receiving the 'extra' (hence the buzz and immediate feeling of euphoria which quietens down).

When a high dose is reduced, the body reacts very much as it would with an addiction but eventually gets used to the new dose. If you stop completely and suddenly, the result can be extremely serious.

When you try to reduce completely off pred, it's the last little bit that can be really hard (say 10-7.5-5mg) because that's the level at which your non-functioning adrenal glands need to re-awaken and start to produce their own hormone. It can take some time for them to get up to speed.

Sarah

[crackers]

i had tests done a few months ago to see if my body was still producing the steroid naturally and the results were positive,so i can understand the reason for the structured reduction but feeling as rough as i do it doesn't help

john

[Twice]

Hi John,

Well, I'm obviously not a doctor but please see my post above:

Sometimes coming off it seems like a necessary evil. It's always a bit unpleasant and it makes you feel a bit rubbish, but really, if you don't get over the 'cold turkey' in a few days and continue to feel ill then it's best to go back to the doc and slow it down.

Doctors seem always to be a bit too willing to reduce medication with WG. It always seems to take a little bit more than they think is the right amount.

I don't know what your original symptoms were, but 30mg at diagnosis doesn't seem like a very high dose to me. I think most people seem to start on 60+. If you're getting symptoms recurring when you try to reduce, my unqualified opinion would be that your doctor might want to think again.